Mood:  cheeky

Wow! What a busy day!

It bites when you can't get to sleep then when you finally do you can't wake up but I'm getting used to it and sometimes it is what it is. I had taxes to finish doing today for a friend and a few family members then off to try and fix the wire mess behind the living room entertainment system. Let's not go there on that one! Hahahaha! Let's just say Dish Network will be out tomorrow putting back together the mess that started while replacing the old entertainment centers and rearranging the living room. Hahahaha! I also had to run a few errands, mail out some forms for SSD Medicare, etc, etc, etc. This just wasn't the day to have any problems. That is until you wake up as you place your hand to your chest and ask yourself, "Is my heart still beating?"

Welcome to the world of Gastroparesis, MS and damaged nerves.

At least I can say after the scare from you know where I am bit more conscience of how much Gatorade and electrolyte water I am now drinking. The low blood pressure and low blood sugar problems is the reason how I got dizzy and fell three weeks ago and suffered a concussion so at least I didn't get up right away and got smarter this time around! I was told by my Gastroenterologist last week I need to drink at least 1/2 to a full 32oz bottle a day. Its tough because I am hardly thirsty and seldom hungry. I don't have normal hunger pains like most people and since my nerves are all haywire the sensors from my brain don't work properly. Now I find myself having to do post it note reminders again through out the house. At least they serve a purpose which is to "DRINK! DRINK! DRINK!"

I received the QMB forms to have the state pay for my added Medicare Part B coverage that I must now buy due to my not so wonderful insurance company named Medical Mutual making mandatory changes. Now Medicare will be my primary insurance company starting March 1st while Medical Mutual will only be paying up to 20% of all claims. In layman terms that means barely if anything. There are always things lurking right around the corner when one suffers from a chronic or terminal condition. Honestly I am lucky to now be used to it. Just part of the sick game. I don't sweat the big stuff anymore and instead do what needs to be done and do it quickly so I can move on with my life. Same with stress and drama. Been there. Done that. Not worth it so now I focus on me, my health and happiness. The fur gang couldn't agree more!

This evening I vowed to start working on court forms that need to be filled out, typed out and filed no later than the end of this month. I spent around three hours this evening pulling up and printing out so many requested papers that I almost ran out of a full ink cartridge. I also had to refill the paper three times. Crazy what the court system will request from you but no need to cry over spilled milk. I need to do what I need to do in order to move on with my life and finally be happy. Amen.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: February 7, 2012 3:22 AM EST

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Mood:  bright

It's Super Bowl Sunday!

I had planned on making this a very low key relaxing day. That was until the head pressure paid me a unwelcome visit. It started around 2pm then it all went down from there. My intentions were to have a friend over and watch the game but I didn't get that far and with the new medication not working it makes me wonder if its even getting into my blood stream. I contacted my pharmacist who explained due to my GI disorder its most likely because the pills are not breaking down properly that I am not benefiting from the medication. This wouldn't be the first time its happened nor the last. Its hard finding medication that works for me or that comes in liquid form. Seizure medication tends to be time released and works slowly building up to a therapeutic range in your blood. I have yet to find anything that works to protect me from seizures.

By this evening once the game started I said, "Oh heck with it!" and gave into my angry brain and head pressure. The waves of nausea weren't being too kind either so instead of pushing myself I decided it would be best to just veg on my couchbed and watch the game.

There were a few times today I experienced stress coming from others put I quickly shut down and flipped the switch to avoid it. It's very important to remember nerve damage needs peace and quiet. I need lots of calm in my life now so it will be a slow process changing my ways and how I react around others who might test me or push my buttons. So far I am doing rather well recognizing the stress and learning how to walk away. In the end it will benefit me by keeping my GP and MS under control.

Tomorrow is a new day and the start of a new week. I plan on trying to take a small road trip for a few days pending on what my GP and head decides. Its only a little over a two hour drive so if things go south-no pun intended-at least me and a friend of mine can turn around and head back. I must take baby steps first in order to test my physical and emotional strength. It will be a challenge but this gal is always up for one!

Here's to a better day!

Posted by GastroparesisAwarenessCampaignOrg. at 11:21 PM EST

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Mood:  celebratory

Finally! Its been two in a row of better head days and boy! does it feel GREAT! Sure, its not been a completely head-free day but I am slowly learning to work through the flair-ups that come with my unique medical condition. Today has also been one of a few last days left working on final touches putting together new entertainment systems. Time to down size! I had a few garage sales over the past year so the nick knacks aren't as bad but I have some furniture that is just too large for the rooms. The two new entertainment systems take up a lot less room and now there is also less furniture to clean. BONUS!

A friend of mine helped me put together the entertainment centers however we hit a few snags trying to hook back up the DVD player. No need to rush, there is always tomorrow. I am also in the process of moving a new large recliner from the back bedroom to the living room since I now have plenty of extra space. Since the living room is where I sleep and where my couchbed is located I plan on making it the most comfortable place in the house! Amen. The new recliners are nice because the top part comes off however the latch got stuck so looks like that will have to also wait till tomorrow.

I got a letter from my insurance company stating I must now buy Medicare Part A by March 31st seeing they will no longer be my primary carrier. This is a huge change seeing I have never heard of an insurance company dictating that you must buy into your SSD Medicare part A benefits. I always had Medical Mutual as my main insurance carrier so why do I 'have' to buy Medicare Part A if I don't want to?..

WELCOME TO THE NEW YEAR 2012!

Looks like also welcome to a new world and new year of crappy medical insurance! I even contacted my insurance provider on why I must buy into Medicare since I am on a fixed income but you know insurance companies! They could care less if you can or can't afford it. All I know and was told by them is I won't be the first nor the last complaining and I have no other choice but to buy Medicare Part A which will now cost me an additional $99.99 a month. OUCH! If you think this is a joke I must sadly warn you that there are other insurance companies who are also making the same changes this year. Seems there are going to be a lot of unhappy people who are disabled who will be forced to leave their main insurance provider due to not being able to afford both. I am fortunate to have someone who offered to pay for my monthly premium. This will be just until I get a few other things situated with my life and some court forms filed.

Isn't it stressful enough just being sick? Now you have to be discriminated once again by of all people...Your medical insurance provider! Thank you Oreo! I couldn't had said it better myself! Hahahaha!

If you ever wondered what life would be like if you were disabled or ended up with a Gastroparesis diagnosis then wonder no more! I am here to say if you don't do well with change then hold on tight because its going to be a very l o n g and bumpy GP ride. WHEW!

Like I mentioned before there are many changes ahead for this gal but in the end they will make my life far more happier. Cheers to working hard and achieving all my personal goals!

Posted by GastroparesisAwarenessCampaignOrg. at 11:53 PM EST

Updated: February 5, 2012 3:46 AM EST

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Mood:  bright

You know what I love most about life? That when you are given another day to live you are also given another day to start on a clean slate. Life is great because when you wake up you are given another chance.

I can tell spring is right around the corner because the sun is now blazing through the curtains where I sleep on my couchbed. Now instead of just having black out curtains and dark colored towels over two large windows I now had to do the exact same thing with the other ones. Its a job just getting ready to lay down and sleep on my couchbed. Once I get up in the afternoon I am back to the same routine taking everything back down to let the sunlight in since I have plants in the room. GP is sure tough work isn't it?! We finally have a break from all the rain but don't knock on wood just yet seeing they are predicting more rain this weekend. UGGGG! Bring back the boats and repair kits for the foundation cracks in my basement. GEES! I dread rain anymore. Its scary because I never know what I will find. Forget ever having a house again with a basement. Thanks but no thanks and at this point downsizing from a three bedroom to a two bedroom might be better suited for this gal. Amen.

I am doing A-OK so far with all my new medication. Today was a better head & GP day. God knows I needed a break! I did run into a few issues this early afternoon but then with the head pressure that started coming on I quickly had to put a lid on it with nails included. You say the word: STRESS. I am outta there with the fastest pair of Nike's you can find! I will not do stress anymore. It is taking a huge toll on my health. My Gastroparesis, MS and other connected problems with my damaged nerves can not be anywhere near drama or stress. There are huge and definite changes that will continue being made for my health and happiness. I have learned to let go of those who decided they no longer want to be part of my life. I have learned to let go of those who do no want to be part of my support system. You can't force people to change but you can change how you react. Call it, 'I hit the don't care switch and now leaving it turned on.' Its time as many of my friends have highly suggested that I take care of myself for a change and not care two cents about those in the city who left my side because clearly they were only thinking about one person. Themselves. This also includes anyone who would rather bask in the sun sipping drinks while a loved one is in the hospital and home suffering. Clearly they too are thinking of only one person. Themselves. Thank you to those who watch my back, gave me a wake up call and made me finally see the light.

I am making my way around all my specialists over the course of the next three months. Now that I am fully aware of why I am getting head issues-seizures, etc connected with my Gastroparesis as well having fully understood post concussion syndrome and my limitations I am in the know and not scared anymore. It also is helping me feel more comfortable when I am home alone. I feel liberated now! With having a head free evening I decided to jump on an offer by a friend to head out to Dave and Busters entertainment complex. It was only for a few hours but I was just tickled pink to get the heck out of my house-jail! I did run into a few waves of head pressure, nausea and dizziness but I remained calm and told myself, "This is just nerve firing going on and it will let up soon. You have someone with you who understands and knows what to do if you have a seizure or black out. You will be ok." And I was! I was OK and I made it through both attacks.

Now instead of keeping things from my friends and those around me I now bring them to my doctors appointments so they can fully understand my unique medical condition. They enjoy meeting my amazing specialists who work endlessly to help me live a higher quality of life and work together to put the flair ups back to sleep. They also enjoy meeting my friends and it helps my friends to understand what I go through on a daily basis. I call it respecting the condition because you must do just that, "Respect the condition." I still need to reschedule my dentist appointment seeing my doctors feel any dental work right now might aggraviate things so its safer to wait. I did make it through my first Drano treatment of the week. It took much longer to work but only as expected since I had to hold treatment off for awhile. I am back to my second treatment come Tuesday next week.

My goal is to get out and enjoy life doing something special for myself as well doing something special with one of my friends a few times a week. Sometimes blood isn't always thicker than water. Although I now realize I only have two family members who are here and support me I pick up the rest times a hundred in friends who I call "My Angels." Amen.

“A friend is someone who understands your past, believes in your future, and accepts you just the way you are.”

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: February 4, 2012 3:21 AM EST

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Mood:  bright

 Since I am taking new medication which most are to relax the nerves that are running haywire in my body I was OUT LIKE A LIGHT last night! I woke up in the same exact position that I fell asleep in. If Littleblue didn't wake me up wanting to go outside I might had slept through my last doctor's appointment today. It was hard waking up because a few of the medications work like a tranquilizer. Trust me. I felt nothing! Hahahaha!

I see my Gastroenterologist today who takes care of my entire digestive system meaning my evil Idiopathic Gastroparesis. I just knew this would be a very long day seeing the Drano treatment didn't hit me until once I started moving around. Nothing like a 10 hour delay. NOT! I might had needed a Port'O'Potty but no worries because I plan on taking all side roads to this doctors appointment. Since I don't have any head pressure or pain so far today I decided to be brave and do this appointment solo. Sometimes I just need a time out for myself. Of course I chatted with a few friends on the way but also made sure someone was on standby in case I needed them to pick me up from my head issues paying an unwelcome visit.

I forgotten just how long I have been seeing my Gastroenterologist but looks like the same amount of time I have been seeing all of my other specialists. My GI doctors assistant Michelle knows me now by name. Shes extremely nice and has a wonderful sense of humor. Its hard to have a bad day and not smile around her. Shes also been extremely supportive when it comes to my Gastroparesis and other connected medical conditions. She said, "You must be having a good day because its so nice to see you smiling again!" I couldn't agree with her more but darn I was just happy to be out of house and driving again. AMEN!

My Gastroenterologist has a file on me now the size of a encyclopedia. We all laugh and make light of it because sometimes no matter how bad life can gets it still requires laughter. She explained they are going to electronic filing via a computer system by the end of the year. I feel sorry for whoever has to put my files onto computer format. YIKES! My GI doctor only ran a bit behind today but otherwise hes always on time. I only waited around ten minutes before he came back in the room which was good because it was too nice of a day to sit in the doctors office. He hasn't seen my cane yet so its been quite awhile since my last visit. I had to cancel the past four appointments due to being sick. He was aware of my past emergency room visits however he wasn't regarding my concussion. We did go over MS and my other Gastroparesis complications. He told me to make sure I was aware there is no turning back with my unique medical situation. He also asked how I was mentally. I replied by saying, "I always do better knowing. No matter how bad the news its still important for me to know what I am facing that way I can accept things at face value. I don't do well when things are hidden from me." My doctor shook his head in agreeing.

I was having nausea and vomiting before I fell and hit my head suffering from the concussion. The reason I am now dealing with the nausea and vomiting and not getting any relief from medications is due to the progression of my Idiopathic Gastroparesis. My doctor then told me, "This doesn't get any better and it is not going away. We can't keep you on some of these medications. You should get relief from them not feel worse. Your body is telling you it needs to rid whatever you consumed when you get these waves of nausea and vomiting. If you fight it things will only get worse. You must allow your body to go through it without medication." I do feel better once I get sick but worse taking the anti-nausea/vomiting medication. Same when I have to go to the emergency room. I might get a temp fix but I am back to square one and feeling worse the next day. I only get relief once I go through the wave of nausea then get sick.

My GI doctor altered a few medications which leaves me minus two now off my list of eight. I can still use peppermint oil at night on a piece of paper towel near my couchbed since I am not digesting it only inhaling it. He said, "I think you learned that after your last surgery when they used it to help your nausea." I told him I am on my second bottle and so far I feel it helps a bit at night when I am sleeping. The MS symptoms were there for quite awhile but agreed it takes time to put all the pieces together and although things haven't changed nor will change at least there is a name to put on the symptoms. Gastroparesis can sure cause all sorts of complications and other connected problems. I now fully believe once again anything is possible with GP. Expect the unexpected but as he said, "Don't expect it to get better. There is no turning back from here." I must take that information and now keep it to heart. If I want to go out on a good day and do something I will because I can't predict tomorrow.

Once we went over my medication and Hell-In-A-Jug treatments that I still must do on a weekly basis I told him, "I feel I am in a better place now because I understand fully what I am facing." He smiled and said just do me one thing. I said, "What?" He said, "Don't fall anymore before you scare the heck out of all of us." Hahahaha! I promised to continue being more aware of my blood pressure, blood sugar and not get up so fast from a sitting or laying down position. Just have to take it one step at a time. No pun intended! Hahahaha!

This evening I finished putting up the new curtain rod and relaxed with the fur kids. They are the best and I don't know what I would do without all my buddies.

"The man who can drive himself further once the effort gets painful is the man who will win."

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: February 3, 2012 1:54 AM EST

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Mood:  bright

Today is the first day of dusting myself off and getting back up on my feet. Time to get back to square 1 and taking care of who's most important. Number #1. Me.

There are a few unfinished projects around the house and I am determined as ever to get them completed before spring. Lately it seems spring is already here as the temperatures go from the 30's to the 60's. My spring tulips are already starting to come up. YIKES! Quite a few of my friends in the city are sick. Mostly allergy related but a few others are fighting the stomach virus and that is the last thing this gal needs! Amen.

Today I had the first of two doctor appointments for the week. I am going on a little over two weeks with post concussion syndrome. I have yet to get over the waves of nausea and vomiting. I still get horrible head pressure pain that comes in waves almost like walking in a fog. I have also been having one heck of time dealing with these darn seizures. I try not to allow them to get the best of me but sometimes it gets tough especially when I have them two in a row. My doctor is only down the street and once I woke up I figured this might be a better day. I felt safe enough to drive since it was just a short drive from my house. My appointment was at 4pm however my doctor is pretty popular and runs a bit behind. Once me and my friend got back into a room it was a little after 5pm but my doctor is worth the wait! The nurse went over a few recent tests and ran my vitals. I am slowly getting better at checking my blood pressure and sugar levels through out the day. I am doing half of the ole Drano treatment today and will finish the other half tomorrow. I still don't feel safe doing the entire treatment at once seeing it causes horrible side effects.

We waited around ten minutes before my doctor came in the room. He is always nice in apologizing for the wait. I have been seeing him a bit over eight years now and he knows my unique medical case inside and out. Its a huge relief knowing I have complete trust and faith in my amazing team of specialists. He went over all of my current medications then we discussed all of the tests I had done at the hospital. I am still dealing with the post concussion syndrome which can linger for months. Since I already have other existing medical problems it will take me longer to fully recover than someone who doesn't have the same issues. Since I am now having at least 3-4 days of nausea and vomiting a week its quite obvious I am still dealing with the post concussion on top of my Gastroparesis. We also added a new word to the equation called: MS.  I have been through various testing for MS through out the past year by my specialists. MS doesn't have a specific test but a range of tests that are done over a period of months to a year based on symptoms. I have been watched by my specialists for over a year now and I have displayed every symptom minus one. Vagus nerve lesions can also be a sign of MS. I guess we all learn something new everyday. All these head issues finally all make sense as well my immune system doing some quite odd things over the past three years. I started having seizure problems almost four years ago and I always thought there was a possibility over the years I might end up with Parkinson's as a complication due to my Idiopathic Gastroparesis. Strange enough I really didn't think of MS as a complication from my Gastroparesis but I wasn't that educated as well on it. Like I said, we all learn something new every day. For now my doctors goal is to get the head issues and flair ups under control. This means taking lots of medication that this gal isn't used to. I went from two to eight. I have a list now to follow while doing my best keeping up with everything. They still need to run blood work time to time seeing where my immune system is and how close I am of putting the flair ups to sleep.

After a very informative appointment I was once again reminded by my doctor that he can't fix me. He can't cure me. No one can. What they can do is their best to help ease symptoms this way the flair-ups can subside hopefully a bit quicker! I told him as long as he can put a temporary bandaid on and allow me a few days of freedom a week I am happy! The post concussion syndrome from the concussion will have to ride itself out. I know my limits as well when its safe to or not to drive. If I run into problems I must pick up the phone and call someone to come get me and my car. So its another part of life I need to work on by altering things a bit but its not like I haven't done it before. Its all in your attitude. Attitude can make or break you.

Once we left my doctors office we stopped and ran a few errands. I got my game face back on. I made peace and acceptance that sometimes in life things are the way they are and I have to make the most of my good days. Amen. The large list of medication will take a bit to get used to but once things ease up on various levels they can cut a few back here and there. Most are to be taken on a temporary basis because as all my doctors as well myself have learned over the years is one thing: Less is truly more!Doctor's appointment visit #1 down and one more to go.

"The difference between the impossible and the possible lies in a person's determination."

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: February 3, 2012 12:42 AM EST

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Mood:  celebratory

THE GASTROPARESIS AWARENESS CAMPAIGN FIST PUMPS WITH THE JERSEY SHORE CAST RAISING GASTROPARESIS AWARENESS!

ORDER THE OFFICIAL GASTROPARESIS AWARENESS RIBBON AND TOGETHER LET'S RAISE OUR FISTS IN THE AIR FOR A CURE!

Posted by GastroparesisAwarenessCampaignOrg. at 11:11 PM EST

Updated: February 1, 2012 4:29 AM EST

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Mood:  d'oh

I woke up around 10am after going to bed around 4am. I had the worst headache with nausea as soon as I laid down on my couchbed. Once 10am hit the darn sun started coming through the towels hanging over the curtains which fired my head pressure right back up again. By 10:30am I started having tremors in my legs then a seizure came on. Seizures are scary no matter when they strike or how bad the intensity. I do my best not to panic which can only prolong the seizure and make it far worse. Forget trying to pick up a phone and call someone. Hahahaha! NICE TRY but NOT happening! During a seizure that is the last thing you are thinking about and your only concern is holding on for dear life and praying the son of a gun gets over with soon! I also worry if I will wake up and not know where the heck I am at. That has only happened once when my ex lived at the house. It was scary waking up not knowing where you are or who is sitting next to you. Never ask a person questions during a seizure because we can't talk.

The worst part of today was having two seizures within an hour apart from each other. The second one is always the real kicker because it makes your entire body sore and its hard to move your arms and legs.Your face also goes numb. This time at least someone was over the house when it came on and noticed my body shaking under the couchbed covers. I am very fortunate I came out of that one with no ramifications. Afterwards I was exhausted but too scared to go back to sleep. Thank you Mr. Valium for doing the trick within 15 minutes. WHEW!

So yesterday wasn't a good Drano day due to unwanted and unforeseen stress. Today wasn't a good Drano day either due to seizures that could possibly get worse or happen more frequently due to the toxic Hell-In-A-Jug poison. I was able to contact my doctor who will be working with me on starting a new seizure medication when I see him tomorrow. Its smart to get a head start on things before the days include more sunlight which means more head issues and more seizures for this gal. Did I just make a funny? "Head Start" on things? Hahahaha!

You know what the rest of the day included don't you? Taking a handful of laxatives in hopes of any relief and praying tomorrow is a better day. The day when I can finally start treatment again. Amen.

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: January 31, 2012 2:41 AM EST

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Mood:  not sure

It's been one strange day! Is this Friday the 13th or did the UFO's final visit planet earth and invade human life-more like human minds?... I have been beyond stressed out and it sure didn't help my head or GP issues. I also learned today that its not safe nor too smart playing your own doctor and deciding when its OK to drive when you are still recovering from a concussion and having a bad day to start with. DUH! Live and learn. By the time it was 11pm I wasn't sure what happened to the day but I did learn a very valuable lesson about being cautious when putting trust in others. Another live and learn lesson but isn't that what life is all about anyways? Lessons learned?..

How would you define the word "Trust?"

Posted by GastroparesisAwarenessCampaignOrg. at 11:57 PM EST

Updated: January 31, 2012 3:49 AM EST

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Mood:  d'oh

You know you are ready to get the heck out of the house when you find yourself watching RuPaul's Drag Race Casting Extravaganza show! Hahahaha! Well...at least it makes for some fun entertainment. I think they need a RuPaul channel! Sure beats most of the horrible shows now on television.

Tomorrow is officially this gal's Drano day. Its been far too long and I am starting to feel a bit toxic. This usually means I could end up in some future trouble if I don't watch it and start lining up the ole jug and chaser glass. Honestly I will be more than ready for it come Sunday.

Once me and my friend got up around 2:30pm we thought maybe Pumpkin kitty got ahold of some Drano of his own! WOW! What a MESS! It has to be the medication and for now I will be holding off on it for a few days. Mostly for his sake but also my friend said for his too! Hahahaha! Talking about POO-POO Kitty! He left a mess from one end of the house to another. We were both shocked! This new shampooer machine already paid for itself ten fold! After cleaning up the last of the mess it took us over two hours. Nothing like waking up to that kind of nightmare. It wasn't too smart of an idea for me to keep bending and stooping because once this evening hit the head pressure started getting the best of me then quickly followed by waves of nausea and vomiting. One step ahead and now two steps back. At least I see my specialist Tuesday and after getting an email regarding my three hospital visits I have a few questions about my tests and cat scan. I realize that sometimes our doctors feel things are best left unsaid in fear that maybe the patient has enough on their plate already to deal with however...I do better 'knowing.' Guess I will find out more come next week at the appointment.

I did my friends taxes today. He was delighted to see he got back from Uncle Sam this year. Although he fell into a higher tax bracket last year I reminded him of the golden rule. "The more you make the more they take." I will be doing a few others taxes over the next three weeks. At least its something to do keeping me busy. I don't mind doing taxes and its nice to learn something new in life that will always come to your advantage later down the road.

Wow! February is less than a week away! Valentine's Day is not too far behind either so that means only one thing: CHOCOLATE! YUMMY! For now I will settle on the beautiful flowers I got this week that make the living room smell like spring. I would rather smell it in flowers than having it early like today's temperatures. Just nuts! One good thing about being stuck at home recovering is I don't have to worry about being out in public catching all the viruses going around. Amen. Littleblue and Oreo are sporting their new Valentine heart bandannas. They are too cute!

Speaking of CUTE!

I just had to share this photo of little Eliana with Mr. GP Blue-our new 2012 Gastroparesis Awareness Campaign mascot. Eliana is a Idiopathic Gastroparesis patient. Thank you Eliana and thank you to your amazing Mom Andrea for helping to design our new mascot.

KEEP ON! KEEPING ON!

Posted by GastroparesisAwarenessCampaignOrg. at 11:59 PM EST

Updated: January 29, 2012 2:58 AM EST

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